Monday August 28, 2023

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August 30, 2023 – a blue moon

Cheryl has two therapy sessions today. One is occupational one is physical. As we pulled into the south portico I realized that it was jammed up with four other vehicles and all are equipped with mobility equipment ramps. I stopped short and helped Cheryl up the curb to her walker that I placed on the walk.

My third thought after damn it is crowded,  why are all these people here now and in my way was I guess we do not have it that bad after all. As I helped Cheryl walk past one van the ramp came out of the side door and settled onto the walk next to us. I thought how convenient. A crippled woman was sitting in a battery powered mobility chair. She said, “Hi!” as we walked by. I thought that looks way more difficult to deal with. I wonder what his morning is like as I looked at the guy helping her.

Tomorrow is our 53rd wedding anniversary and the day after that the anniversary of when we met. It is also a blue August moon as it was in 1966. It makes me wonder how often blue moons occur in August. We met on a special day. This year the same celestial event happens. We have had and continue to have a special life. (Follow-up — only once between 1966 and this year. According to the internet of all knowledge.)

So far we do not need a battery powered chair for Cheryl to get around. I do have a transfer chair for when she is not moving well. I bought it as a convenience to me.

Carpe Diem

It’s Hot

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The weather weenies all recommend the same thing  – it is hot, stay home if you can. It is snowing, stay home if you can. It is raining, stay home if you can. There’s a new strain of Covid called ny.g.78.5-17 circulating, stay home if you can. Canada is on fire, stay home if you can. The Indians have landed a lunar lander on the south pole of the moon, stay home if you can. The head of the Wagner group got his plane shot  down, stay home if you can.

The Republican psuedo debate is on television tonight, stay home if you can.

A woman on the other side of the gas pump to me remarked they say the economy isn’t bad, making clear reference to the price on the pump. I thought, stay home if you can. I said, it’s hot though.

There are so many things for us to worry about, I am going to stay home if I can.

Hot outside, stay home if you can.

Carpe Diem.

A Quiet Monday

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My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.

This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.

Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.

After awhile it is very hard to deal with random nonsensical conversation.

I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.

We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).

I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.

A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.

She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.

These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.

Maybe one day I can find her mind for her and give it back to her.

Carpe Diem.

Soft Voice

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This particular symptom of Parkinson’s disease is really annoying to me. Cheryl is doing speech therapy and when she does the exercises she is easy to understand. Today she is out in public and moving her lips with no sound coming out. Today for some reason it is making me on edge. I tried my old technique of making her mad at me. That did not work today, but maybe it will work tomorrow.

I miss our conversation. These days with her worsening dementia the conversation can be meaningless and totally random or it can be meaningful and loving. Her brain chemistry is a mishmash. She is easily distracted by small things around her. Although menus are a challenge we used to be able to discuss various menu options and whittle them down to one or two. lately that has been an incredibly hard struggle only made worse by her soft voice and my inability to understand more than every third word.

The Parkinson’s Voice Project is a charitable organization that has done a lot of work in this area. They train speech therapists with a program designed specifically for parkies.

The program only works, however if the parkie will do the exercises and practice speaking. If she will not or cannot or is mentally unable to plan time for these exercises their helpfulness is lost. Imagine a person dealing dementia reading the exercises silently to herself. It can make you cry or grit your teeth in frustration. My small experience with teaching presented some of these same frustrations. It has been ingrained by many generations of poor teaching technique that it is bad to make a mistake. Boo boos are embarrassing. Why do we teach kids this? Why do we remember it as adults and still shy away from errors? When some get this despicable disease of Parkinson many will not help themselves because they are embarrassed to make a mistake. It is ingrained in us from early childhood.

Carpe Diem

Quiet Mornings

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I treasure the early morning these days as Cheryl’s disease destroys her mind.

Last evening – pizza Tuesday – I watched her interact or not with the conversation around the table. Reminiscent of family gatherings when she and her family was younger, there was laughter and loud talk, multiple conversations and talk of upcoming travel and other events. She seemed overwhelmed and at the same time comforted. It was like old times.

Her conversation was confused when we returned home. What time is Nancy coming to pick me up? Will Jan be with her later? I couldn’t hear what Dan was saying. When we have the next family reunion… Her chatter goes on and on. Dan was not there and Jan has passed from this life.

I mull over her conversation in my mind and wonder what if any of it she will remember. At about 1 am she awakened and wanted to go get the cookies out of the oven. I somehow convinced her that she was probably dreaming and we could make cookies tomorrow. After using the toilet we returned to bed and eventual sleep.

In the morning these days I awaken about 7 am and leave Cheryl to sleep undisturbed until 9:30 or so.

It is peaceful. I hear her gently snoring in the bedroom as I read and enjoy some coffee. Or write these little stories.

Carpe Diem.

It is Quite a Task

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It is a task to watch her struggle to walk. She will not ask for assistance or help. One has to brave the storm and help anyway. To me as her principal helper, it is frustrating.

We went to the physical therapist and the occupational therapist today. I suppose I was hoping for some magical solution to Cheryl’s interest and attitude towards exercise. I suppose I was hoping for a story end like the tale of Lazarus. (“Rise up and walk!”)

He suggested to her that she practice by taking big steps and for exercise stomp down on the floor to emphasize a marching motion. He suggested that she practice getting out of and into a chair– nose over toes. Bend forward to stand up. Bend forward and stick your butt out to sit. When you are up – grab your walker. Practice this often and muscle memory will kick in. When we were home she complained of pain in her back. Her core is weak.

He politely suggested that I should coach her to put her feet in the right place and lean forward to stand up. Her has no idea how much friction that coaching causes. (You are always telling me what to do!) I do tell her to lean forward and stand up. I usually put my hand on her back to help her and steady her as she rises. She leans on me pretty hard. She might say stop pushing but if I remove my hand I find that she was leaning hard backward on me and she can easily stumble back and lose her balance. I ignore her complaint mostly and apologize later when I am sure she is stable.

I learned an important nuance today from Justin the physical therapy guy. He had never met Cheryl before so part of the visit was him looking through her records and asking various questions about this and that. He asked about falls. Everyone new asks about falls. I replied that Cheryl falls a couple times a week. She usually falls backwards and it seems to me that it is getting worse. She tends to lean backwards when getting up from a chair. If she passes by a stable solid piece of furniture that she has grabbed for extra support she hold onto that as long as possible even to the point of leaning backwards to maintain contact. Justin told me that is pretty typical for folks with balance issues. (Huh. I was under the misguided illusion that parkies tend to hunch forward. Cheryl never hunches forward.)

I know that there is no magical solution. But I can hope.

Just like I can hope her voice will get stronger with speech therapy.

Just like I can hope for the occupational therapist to be useful to her.

The palliative care clinic is focused on improving her sleep. Part of that is controlling her constipation. If she sleeps well she does better during the day. She can remember who I am for example. She will remember to eat. Perhaps she will quit losing weight.

There is no cure for this debilitating and degenerative disease.

Carpe Diem.

Palliative Care

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Today we saw the doctor whose clinic is concerned with palliative care. After a long discussion about drugs, symptoms and what the palliative care clinic does the conversation turned to what we hoped to achieve from it. My hope is for better existence for Cheryl. She has trouble vocalizing her hope.

From the National Institute on Aging — (NIOA) — the next couple paragraphs are useful general information. The doctor’s question hit me spiritually, what are we expecting? It is a good one — What are we expecting? A cure? Return of mental acuity? A better attitude about living with one’s plight? More mobility? A stronger core muscle strength? — A flood of thoughts entered my mind.

What is palliative care?

Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.

Who can benefit from palliative care?

Palliative care is a resource for anyone living with a serious illness, such as heart failure, chronic obstructive pulmonary disease, cancer, dementia, Parkinson’s disease, and many others. Palliative care can be helpful at any stage of illness and is best provided soon after a person is diagnosed.

In addition to improving quality of life and helping with symptoms, palliative care can help patients understand their choices for medical treatment. The organized services available through palliative care may be helpful to any older person having a lot of general discomfort and disability very late in life.

Who makes up the palliative care team?

A palliative care team is made up of multiple different professionals that work with the patient, family, and the patient’s other doctors to provide medical, social, emotional, and practical support. The team is comprised of palliative care specialist doctors and nurses, and includes others such as social workers, nutritionists, and chaplains. A person’s team may vary based on their needs and level of care. To begin palliative care, a person’s health care provider may refer him or her to a palliative care specialist. If he or she doesn’t suggest it, the person can ask a health care provider for a referral.

Why (a conversation with myself, often) is palliative care necessary and useful? What benefit will come from this method of viewing Cheryl’s worsening Parkinson and her associated dementia issues? These are my thoughts.

Since the beginning of this road all I have wanted is for Cheryl to be safe, comfortable, mobile, and as independent as she is capable. Seven years ago, just before we purchased this condo that we live in now we lived in a neat old five bedroom, two story house with a basement. It was a hundred plus year old house with much space and character. Cheryl’s main complaint was her knees. At first I moved her office area downstairs to the front bedroom. We called it the guest bedroom and sometimes “your Mom’s bedroom.” I rearranged the use of the other extra bedrooms upstairs. I remodeled one and took over Cheryl’s old office upstairs as my own. The upstairs bathroom was accessed through the office. The home office was moved to the guest bedroom downstairs as was the rest of her equipment – sewing machine, computer things, printer, etc. but Cheryl had adopted the upstairs bathroom as her own and regardless of where she was maintaining a presence during the day she went upstairs if she required the facilities. (The hallway to our big bedroom in our condo she now refers to as upstairs or downstairs as her Parkinson and memory issues worsen.) She complained about her knees everyday until we moved to our flat single floor living arrangement.

During the seven year process of moving, adapting, adjusting I put her needs first not thinking about or recognizing what those adjustments would do to my emotional and physical health. Not once did I think about how my life would change when Cheryl gave up driving voluntarily when she could not remember where she was or where she was going. Nor did I realize that she was starting into her creeping memory issues. A couple months later when she became terribly upset and anxious one evening because she could not find $1.89 mistake in the check register that she was still computing by paper and pencil, I did not realize that she was struggling with cognitive issues in addition to memory issues. Her math and logical sequencing was gone or mostly so. She did not admit it to herself or to me and I did not recognize it. (notice – cognition in recognize) It was perhaps two years later that she was unable to follow recipe instructions or sewing pattern instructions. (I found myself reading how to reverse an item so that the seam allowance was hidden.) In retrospect she was probably terrified that she could no longer do those things. She was in fear of losing her mind and it caused anxiety.

My hope or expectation is that she will achieve some level of relief from her anxiety. My hope is that she will sleep more comfortably. My hope is that she will accept her disabilities that inhibit what she wants to do and she will ask for and accept help freely offered by her spouse (me).

My hope is that I will be more comfortable with letting her do for herself as much as she can while she can do it. Whatever it may be. My hope is that I will find the strength and the financial means to provide for her future care. My hope is that I will plan activities and be cognizant of the fact that plans will change without warning and I will not rage out loud when it does not go my way.

My hope is to be able to let go once in awhile for my own mental well being. I hope that this group of clinicians can help with living and life. But mostly I hope to get a good night’s sleep most nights.

Carpe Diem.

Why

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Why do I feel like Cheryl has to try out restaurant restrooms like a small child who has been recently potty trained? Is it my imagination or the real feeling that she is has. She seems to ignore her bladder and her bowels until we get to somewhere that she may get trapped. She has no ability to think or plan ahead for toilet contingencies. And then at other times it is all she can think about.

Why?

Yesterday, the discussion was about some lesson plans and software development for the early computer program that she pioneered in the grade school our kids attended when they were small. We had come to a nearby park for a walk after dinner. She spoke of this as though it was on going. She had to get that organized.

On the way home from dinner in one of her favorite restaurants, there was a near disaster with urinary incontinence and no protection for it. This part of our life saddens me. She will not ask for help. She knows that she needs help but is either unable or unwilling or simply embarrassed to ask for it. When I offer unsolicited help she will become angry and anxious. I understand this completely and at the same time I do not understand it. An urgency in her head is organizing old birthday, Christmas and other greeting cards in her office. Taking a break from that for a bathroom break has no priority. Her “full” signal does not work correctly. By the time her body signals full to her brain, she is stuck because she forgot how difficult it is to get out of the chair. The bouncy motion she uses is not helpful. She will not ask for help.

Why

Tonight when we got to the restaurant she was looking around to see where a couple of our kids were. She thought that they were coming even though there was no mention of them coming or any communication of that sort. An idea jumped into her head from left field. In the afternoon lots and lots of left field thoughts appear. Why is this part of the plan?

Why?

Why in the afternoon? Or is it merely that I notice in the afternoon and it grates on me more after having dealt with her worsening dementia all day? Sometimes her memory is so short it is not unusual for her to forget the previous sentence. Where are we going? – can create great frustration in a caregiver (me) when repeated at two minute intervals throughout the day.

This essay started with me sitting in one of our favorite restaurants wondering if she would be able to get back through the ladies room door. As I now read what I wrote that day and think about where we are with this disease — we is an important part of those thoughts — my meditation drifts off into why do I think I know better? For that matter why do folks generally think that they have the solution to this dilemma or that conundrum and freely volunteer the solution? There is no answer to that last comment. I can, however, parse and control and limit my own contribution to living our best life with Parkinson.

Tomorrow we see a new doctor. Her calling and interest is palliative care with a chronic degenerative neurological disease. Cheryl’s movement disorder specialist suggested that she might be able to help. He also wrote scripts for PT, OT and speech therapy. She has been therapied by these people before. She lied to the PT folks last time when they asked if she tried the exercises that they gave her to do. I do not think her moderately cognitive impaired brain thought of it as lying. She thought about doing the exercises, that was enough.

For my part, I bought a caregiver call button from Amazon. My thought was that Cheryl could press her button if she really felt that I could help her – get up, find clothing, get socks, and a myriad of other small helps with which she is struggling (her mind says no she is not) but does not want to accept that she needs help with (see I did it again.) Her speech is so soft she cannot say loudly, “I need help” or I am not listening. With this doorbell she could press it when she needs help rather than me hovering around the bathroom door asking, “Are you doing okay?” She does have to keep the button with her. That is the next great solution to find.

Admittedly it seemed like such an attractive solution. Ugh!

Carpe Diem

Like Drifting Sand – some days

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Friday – Happy Friday. We have gotten to the end of the week, almost anyway without any major disasters. This was therapy week. Cheryl’s doctor suggested that she might benefit from PT, OT and ST. Those are speech therapy, occupational therapy and physical therapy in reverse order from my listing of initial abbreviations.

These were the initial visits for evaluation of where she is currently. She did this last year. This disease of Parkinson knows no schedule or any sort of time table but my overall observation of Cheryl is that she is deteriorating at an incredibly slow rate. She is nevertheless deteriorating. I put her in a transfer chair in the morning to take her to the toilet and then later to the kitchen table for breakfast. Eventually she is able to maneuver herself around without my help.

No one dies from Parkinson’s disease, they die with it. Some days however their care partners seriously consider cliff jumping without the necessary safety apparatus. (Sarcasm)

The mundane rigor of it all juxtaposed to the chaos is draining. Perhaps we all need to talk more.

The occupational therapy appointment was at 3:45 PM. The facility is handy. It is about a 10 minute drive from our house to the Drake Center. Cassidy asked Cheryl lots of simple questions about where she is physically and what she did with her day. Questions about cooking, cleaning, sitting and standing. Cassidy also preformed some simple strength and agility testing. Cheryl only misspoke once or twice about her role in the household chores.

My grand plan for the day had been to visit the OT expert and then move on to the Board of Elections. More about the Board of Elections later, but the scheduled appointment to the occupational therapist was almost foiled by a trip to the restroom. At 3 PM I suggested that Cheryl visit the toilet – just in case – so that we had time to make it to the OT appointment at 3:45 PM. Only 5 minutes away but there is that “Please arrive 15 minutes before your appointed time” that medical health services always ask you to do for them. (What makes them so special?) Nevertheless I try to abide by their scheduling rules. Parkinson raised its ugly head and said, “bathroom! Now!” After a little bit of argument we managed to get to the appointment at 3:45 PM. Sadly, there was no 15 minute breather.

In Ohio there is a statewide ballot issue concerning the way we modify the Ohio Constitution. The leg-ups and self-righteous in control of the state government are annoyed with the fact that the OMG’s and the gracious are so easily able to call them to task by proposing a constitutional amendment and forcing them to defend their positions in public. Never mind the fact that graft and greed in the form of direct payment for votes has caused the leader (Householder) to be visited upon by the Feds with gaol (old English) in the offing. The amendment process has survived the rise of the special four who attempted to write themselves into the constitution as the only ones to cultivate cannabis in Ohio if it became legal for recreational use. (I wonder if bars will have special places for them with the tobacco smokers?) So, in the end, the process probably does not need to change.

Early voting at the BOE was not in the offing, however, The OT appointment went longer than I had expected. I do not know what I was expecting. The early voting office closed at 5 PM which was about 4 minutes before we got there. So, after a series of snafus we finished at one of our local pizza stores which was located across the parking lot from the Board offices.

Pizza is a go-to for Cheryl when she cannot decide on anything else. We have often come to this particular pizza palace after church on Saturday evening. We succeeded in landing a table at the empty restaurant at 5:16 in the afternoon just as the skies opened up with a late afternoon thunderstorm. It is Ohio and late July. We enjoyed our pizza and drinks and sat to watch the storm wash our car in the lot. When it came time to leave, Cheryl announced as she often does that she had to visit the rest room. All sorts of things zip into my head when she makes this announcement. Mostly there is a flashback to the many less-than-satisfactory trips to public bathrooms. She refuses to recognize that she needs help more than merely occasionally in the ladies room. I have been in many over the past few months and yet I think she is unconvinced that any help is required. (So I sit and wait to see if she can get back through the door with her walker and seethe while I do it.) Public bathrooms and their cleanliness and the equipment or lack there of is often the main topic of the drive home conversation. (Not the quality or the enjoyment of the food.) It is no doubt just me and my internal opinion but often it seems she is acting like a newly toilet trained child who needs to try out all the toilets they come across because they have this new found ability.

We left the pizza store and drove to one of our favorite soft serve ice cream places for dessert. She wanted to use the toilet there also but theirs was marked closed for repair. I wonder how they get away with that with the health department rules we have.

When we returned home, she spent many hours sitting in her office touching and reading her cards. We eventually went to bed at midnight. She seemed to know where she was then although she had spent the better part of an hour in our from guest bathroom. (Lots of bathrooms are in this story.)

She awakened today at 9:30 am. Spontaneously! I attribute that to a new medication her neurologist prescribed along with the OT, PT and ST. He felt that some if not all of her sleep problems were due to smoldering anxiety and depression issues.

After breakfast and after getting cleaned up and dressed we had a funny little discussion.

“When did I get involved in this play? Who was that girl that put me in it?”, she asked after we had discussed the weather and Jill’s Christmas in July party tomorrow. I thought she was kidding about her situational awareness of her disease. I was wrong. She believes she is in a play that may never end.

All the world’s a stage,
And all the men and women merely Players;
They have their exits and their entrances,
And one man in his time plays many parts…

As You Like It — William Shakespeare

Carpe Diem.

Occupational Therapy

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Today we go to OT. Next week we see the speech therapist for the second time as is true for the physical therapist.

On Tuesday of this wek the speech therapist gave me as caregiver a homework assignment. I am to keep track of what Cheryl eats and whether she has a coughing fit while eating whatever it is.

Yesterday I wrote: She had scrambled eggs and bacon with toast and orange juice for breakfast. I aways put water on the table near her just in case. She did not cough (or hack) while eating any of this. Earlier when I gave her the morning meds she coughed a bit while sipping water through the container with a straw. This often happens but less so when I get her to sip a little water before she takes her meds.

She coughed not at all again until our late afternoon grill out on the patio. Again when she was sipping a little water.

I have to admit that I have paid little attention to how Cheryl eats. She eats more slowly than I do. I am a wolfer. She is not. She drinks very little liquid while eating.

Thinking back, her mother drank very little at supper time when we had her over. Her mother had a swallowing problem as she aged, often her throat worked bacwards for her. (She would become embarrassed and refuse any kind of help. I would take her home.) I wonder if Cheryl worries about this problem her mother had. I wonder if Cheryl worries that she might develope the same problem.

On this morning we had Pillsbury refrigerator rolls. These are a favorite of hers so I try to make sure we have some hanging around in the refigerator. She always has orange juice but this morning I also gave her some applesauce. She has been requesting this more when she takes her pills. After eating the applesauce and two and most of a third roll she complained of “nausea”. I do not know what she is actually feeling. She has not vomited since I went to visit my sister two years ago in California. (Then she was extremely constipated.)

She coughed for a bit and I gave her a chewable Tums smoothie with which she sipped a little water. All was well afterwards.

It is remarkable how little water she uses to take her meds. I encourage her to drink more water. It is remarkable how repetative it all is. It being daily life.

Carpe Diem.